Advocacy groups for individuals suffering from long Covid are expressing concerns over how they are being treated by healthcare providers. The feeling of being “forgotten, unheard, disbelieved, isolated” is especially pronounced among those who have secondary illnesses such as mast cell activation syndrome (MCAS), which is thought to be triggered by long Covid. Two young Londoners, George Cooper and Elle Gorman, have experienced this firsthand. Although they have been diagnosed with long Covid and MCAS, healthcare providers have not taken their symptoms seriously, leading to poor treatment.
George, a former rugby player and runner, was recovering from glandular fever when he fell ill in March 2020. He experienced months of lingering symptoms and was eventually diagnosed with long Covid after a positive antibody test. George’s symptoms continued and he developed food allergies, swollen lymph nodes, palpitations, massive stomach pain and fainted. This led to a diagnosis of MCAS. However, when he shared this with his GP, he was told that he had myalgic encephalomyelitis and would have it for life. Another doctor suggested George pay for a private appointment, but he was unknowingly reacting to bulking ingredients in his medication, which caused him to become even sicker. As a result, he developed non-viral hepatitis and was seen by yet another GP who was “so unreceptive to the point where they were actually angry.” George’s symptoms led to thoughts of taking his own life and he was sent to an eating disorders clinic. It wasn’t until the results of his biopsy came through that his diagnosis of MCAS was confirmed.
In contrast, Elle Gorman was questioned whether she was “not eating on purpose” when she shared her symptoms with healthcare providers. The lack of recognition of MCAS, which causes an immune response to be triggered, has contributed to inadequate treatment. The NHS recognizes other forms of mast cell disease such as mastocytosis, but not MCAS. Expert guidelines from the National Institute for Health and Care Excellence (NICE) similarly lack guidelines for MCAS.
The experiences of individuals like George and Elle highlight the caring and recognition gap experienced by those suffering from long Covid and secondary illnesses such as MCAS. While healthcare providers may acknowledge the difficulty in understanding these conditions, it’s crucial that individuals are met with empathy and receive the proper care they require
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